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Wow!!!!!!!

What you were told is not true. There are several causes of pancreatic issues. Google pancreatic disorders. Bill

Unknown means exactly that. The Doctor did a test of a small universe, say 39 mutations. He/She found one mutation. As we all know there are almost 2000 mutations. The Doctor doesn't know what the results would be from a full sequencing. A full sequencing could identify a mutation or not...

Bacterial overgrowth will cause really foul odor. See your CF Specialist or just call for a Rx. Bill

I don't have any suggestions for you. I think that you are right on target, your child's health has to be your prime concern. Stand strong and if you weaken, come back for reinforcement. Bill

Neither do I. Go to another CF Center and get a second opinion. Bill

Sweet: Is your son being seen at an APPROVED CF CENTER by a CF Specialist and a CF Team? There is a sweat test that is done locally and it is not the same as in a CF Center. The other thing that bothers me here is they found 2 MUTATIONS but say one is "UNKNOWN. The test was for CF...

Love: You are right. Just more reason to slow down. All that we know now is that this kid is a carrier. Bill

Teri, Love: We need to note where these tests were done. A local pead did a "screening sweat test" not the same sweat test that is done in a CF Center. False positives for this scan are very common. All that we do know for certain is that he has one mutation. The world is full of Doctors...

OK hold on. Right now he has only one (1) known mutation. He would need two (2) to have CF. Unknown simply means that they have the results from a very small universe. In that universe he has one known mutation. What is unknown is does he have a second mutation from the "1900+ universe and...

There are almost 2000 known mutations, any two (2) will cause CF. There are many levels of screening for these mutations, For example a newborn screening is for only 39 mutations. Another is for about 100. Your son needs to have a FULL CF SEQUENCING. The results of which would confirm his...

PJ I'm 73, you keep up the good work. You will find alot of "old people with CF" here. Bill

At this point in time, I would have to ask you, how many second opinions do you need? Let it go for a few years or until there is something resembling a CF flare up. It is good to advocate for your child but not to the point that the Doctors ignore you. Bill

There are almost 2000 known mutations, any two (2) will cause CF. A newborn screening is only for the most common thirty nine (39) mutations. Your prenatal screening was for less than 100 mutations. Forget those tests. Having said that, from your post, I don't see anything jumping out at me...

moxie: Google Steven D. Freedman,MD, PhD, in Boston. Trust me, it would be worth your time and effort to see him one time and get your CF-GI on track. Bill

Sara: There are two adult clinics in Portland: Kalser Permanente Northwest Regional Richard C. Cohen, MD (503) 331-6577 Oregon Health & Science University Gopal Alada, MD (503) 494-1602 I would be interested in health safety precautions. Waiting Room? Contact Precautions? PFTs done in...

I have a CF Clinic that has never done a CF scan, ever. I also see a CF-GI Specialist. When he first saw me he ordered a scan of mt GI track, later by a MRI. This was 10 years ago. Nothing since. Bill

Yes!!! Did they do a match of your family's known mutations or did they do a "standard" 39 or 100 most common mutations? A CF Doctor that I had, in the past, did say that the "newborn" screenings do have "false" results. If you and Hubby are both carriers, there is only a 25% chance that DD...

As you know there are almost 2000 known mutations any 2 will cause CF. The genetic test that she was likely given was for 39 mutations. Given the Family History this CF Doctor should order a FULL CF SEQUENCING. If he/she won't order it, go to another CF Center and have it done there. Your...

As you know there are almost 2000 known mutations any 2 will cause CF. The genetic test that she was likely given was for 39 mutations. Given the Family History this CF Doctor should order a FULL CF SEQUENCING. If he/she won't order it, go to another CF Center and have it done there. Your...